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https://www.nature.com/articles/ncomms15801 As this describes some (a minor but very frustrating part) of my experience: difficulty with auditory multi-tasking, screening out background noise while doing things etc. I wondered if some of these processes might be relevant to ME/CFS. I am...

Fun as all this psychiatry bashing may be, I do think it’s a subject that warrants further investigation and study. Unfortunately, like much of the well conducted scientific research into ME/CFS, there hasn’t been enough of it. It would be lovely if they consistently held themselves to high...

Combines empathy and science. Um, I thought that was _supposed_ to be your GP?

Nice article, thanks @Indigophoton! I’m glad I’m on a day I could read the original. Pleased to think/imagine/hope that lack of replication in psychology is being addressed in earnest too :)

Funny, I’ve always thought of intelligence as being exactly that: enjoying the experience of being challenged, of learning, and of challenging and changing your assumptions. ...but maybe that’s just the path to enlightenment. ;)

Non-complaining sick people = higher rates of ‘cure’ that can be claimed. So, no, not useful for society, resources, govt funding, etc etc (those who fund the research). But useful for the people doing the ‘research’: we got funded, we did something, it got published as a ‘success’, we’ll get...

I tend to describe myself as mild/moderate but on your scale I’m mostly 2 with frequent dips to 1 and regular dips to 0. So my scale is finer (more steps) in that range. ETA I think I might have used your scale 4yrs ago when I thought I was burnt out. Back then I was still working (and...

If numbers were on the outer bounds of normal range, then I would tend to think that a trend (whether the number is moving in or out of the normal range over time) and any difference from the patient’s own norms where known would be more interesting than absolute numbers. ETA: But it’s all...

I do hope it’s been a damp week and the fire is a garden burn off with proper brick incinerator or a nice blaze inside a wood stove to dry out the house. If it’s full summer, I’m afraid we’d have to put it out in any other case. Especially in Australia! What were you thinking! ;)

Thank you for this. I recognise the experience much better in these questions. A couple of possible tweaks: I know that questionnaire methods all tend to use this sort of repeat the sentence with just one word changed format. I find it very hard to read on bad days. Perhaps if you can’t...

Could someone please direct me to an up to date summary of ampligen? (=Rintatolimod) I did google and find it on MEpedia but it looks like it was last updated in 2016?

Oh, and also from the same thread: Studies to test the effects of GET and exercise in general on pwME. I am aware that there are ethical considerations here but some more studies into the effects of exertion, and patient usable definitions of levels of exertion, over time (multiple days, or a...

I’d like to second one of @Alice’s suggestions here: Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018 About replicating trials of exercise physiology applied to people with ME/CFS, using heart monitors and other rest/‘exercise’ strategies we can implement at...

Yes I think so. I don’t think I have OI (as others on the forum describe it) but I do now (only figuring all this out over the past few months) find that lying down means I can carry on reading and even commenting on the forum far longer than I can when sitting or standing. That was an early...

On a personal note: ooo! Me me me me me! ... :/ always it’s research for other patient groups (oh, you’re not sick enough, young enough, living in Palmerston North already, unaware of the existence of ME/CFS...), now it’s me! But the other side of the world. Ah well. Will wait and see..

I agree with your idea I think but would approach I differently: I’d like all the literature reviewed and analysed for flaws in methodology, and more importantly, bungled analysis. I think there is a lot of literature out there which seeks to prove that something works (and fails but they try to...

I’d like a review of all research involving ME/CFS (or variants of the name) which breaks down results by diagnostic factors used and observed throughout the trial. Ideally complete with total numbers observed and stats for significance (retaining large effect size even in cases of small...

:woot::laugh::rofl::geek:

Funny you mention it as, just in the last 2 days, I’ve been trialing the brain cooling approach I read about for MS. Ices to cool the upper palate. Whenever I get foggy over the past 2 days I’ve used a block of ice in my mouth (when it’s big I have to move it a lot so it doesn’t actually freeze...

I would think so. But i’m a relatively recent onset and over the New Year someone asked me if I think i’m trending better or worse. I said that my attitude toward it changes what it looks like from the outside, which is true, but I implied no change. I simply forget what i’m like when it’s bad...